Wednesday, October 28, 2009

31 for 21: Hey parents, show me some speech, please!

Can I make a request of all you bloggers out there?  I’m trying to do a little personal research, and here’s what I’d love your help with…

Take a little video of you chatting with your child, toddler to teen or beyond.  This goes for all kids, but especially kids with DS.  Just regular stuff, like how their day was, what’s for dinner, tell about their favorite TV show, what do they like about the siblings… anything.  Just get them talking.  If you have younger kids, just starting to talk, even mimic words would be helpful.  Even if it’s only understandable to you at this point! 

Then post them and let me know that you’ve done so.  Please?  Thanks so much!!

Friday, October 23, 2009

31 for 21: Quiet week in review

It’s been a very quiet week here.  The girls have been at my parent’s house since Sunday, and I’ve spent 98% of the week lying in bed and/or sleeping, trying to rest this illness away on strict orders of my husband.  I got more than bored a few times, but I tried to comply.

Today I went back to the doctor, and he confirmed my suspicion that my illness (yep, that fun h1n1) of last week morphed into a sinus infection and that’s what’s hanging on and causing me trouble these last several days, in addition to the residual cough from the flu.   Antibiotics were started and--placebo effect or not--I’m feeling better this evening.  Unfortunately, it’s way past my bedtime but I’m suddenly unable to sleep, so I’m blogging a tad before returning to bed to try again.  Probably all that snoozing this week… rest overload. (huh?)

My birthday came and went, and as they tend to do by this stage, I suppose, it made not much difference in the days around it.  My sister did bring by some beautiful bright flowers and a cheery balloon, and today, my lovely friend Julie gave me an individual piece of cake that she bought for me, so I’d have birthday cake.  Isn’t that thoughtful??  I like to have a picture from each birthday for some odd reason, so here’s what I’m calling the mini-birthday summary pic.  Pretty flowers and yummy cake. And a goofy 36-year-old.

Tonight I had dinner with a couple college pals, but I’ll post a pic or two from that in the next few days.  Man, time flies, doesn’t it??

Tomorrow morning I go to meet Mom halfway to pick up the girls.  This weekend we’re doing a Trunk or Treat at the in-laws’ church, and we’re back in business for football Sunday again.  We had planned a trip to see our dearest KC buds this weekend (my birthday present/trip from M), but it wasn’t meant to be right now, so we’ll schedule it again very soon. (Very soon, ch!)

Have a good weekend everyone! Wishing you all good health and banishing of the sickie germs!

Wednesday, October 21, 2009

31 for 21: Fall blog background up

In all my time resting the last couple days, I did get a chance to do a new fall background for my blog. For those of you interested in that kind of thing, come check it out. I'm happy to share, change the header to your blog name if you'd like to use it as well. Just drop me a line...

Happy Fall, Y'all!

31 for 21: Remedy? Anyone?

So far this whole post-about-DS-thing is not quite working out.  Partly because I haven’t felt well for going on 11 days now, and partly because I just haven’t been able to formulate well what I want to say.  Oh well, I can keep trying. If it’s November before I get it together, so be it. 

The girls are at my mom’s this week, after I have just not been able to kick this remaining little pesky part of the sickness, or a different sickness, who really knows…  I’m down to a nagging cough and sore throat, but I’m still having trouble with energy as well.  The thought was that the girls would go visit Grammy so I could get a couple days of uninterrupted rest and really kick this thing. I keep thinking that everyday will be the last day. That FINALLY tomorrow will be my day of feeling good again… but not yet.  Hopefully tomorrow is the day…

If you have magical tips of great ideas, do share.

Tuesday, October 20, 2009

31 for 21: Down syndrome footprint

I came across this recently, and thought it was interesting… DownSyndromeFootprint.org

Check it out and share your thoughts. I’m curious.

Sunday, October 18, 2009

31 for 21: HealthCare Sarcasm

From an email I got today…

---------------------------

clip_image001

Let me get this straight...
We're going to pass a health care plan written by a committee looking for compromises, passed by a Congress that exempts themselves from it, signed by a president who smokes, with funding administered by a treasury chief who didn't pay his taxes, overseen by a surgeon general who is obese, and financed by a country that's deeply in debt.

What could possibly go wrong?

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Friday, October 16, 2009

31 for 21: What’s in store for 36?

In 59 minutes, as tradition holds, even though the official entry time isn’t til later in the day, I’ll no longer be the nice, round, trendy age of 35.  I don’t know why it’s trendy, but TV characters aren’t ever 36, they’re always 35. But I digress…

I’m a romantic at heart, always believing that my fairytale will begin, glitter and all.  I always wish for some big magical event, some wonderful sunshiney day full of good things, smiley people, and lovely flowers lining every step I take.  Well, not really.  But something like that, maybe.  When, in actuality, birthdays aren’t a big deal around here, and that’s ok.  I hope someday we’re financially sound enough to do fun, lavish kinds of things just because it’s a birthday, but for now, we say “Happy Birthday” to the celebrating individual about 50 times throughout the day, and that suffices. 

In all fairness, we are doing something really fun next weekend that is supposed to be representing my birthday present, and I’m looking forward to it.  (Watch out LC and gang…here we come!) So it’s not like there’s no celebrating going on, I guess it just looks different at this stage in my life, this “season” as many of my circles have been referring to it lately.

Birthday or no birthday, I am very thankful for everything I have. I’m very careful not to take for granted how we have been blessed, and if I don’t get to go out to dinner on my birthday, well, that’s just not the end of the world at all.  As I sit in my home with my two healthy daughters and employed husband, I’ll still feel like I have gifts aplenty.

31 for 21: Awareness through Beauty

I did a new background for Braska’s blog last night, with her help, of course.  She is getting better about choosing between two options, so she likes to help.  And she must have liked what she chose because while I was working, as the elements were coming together on the layout, she said, “Oooh, pretty!”  It’s so fun to listen to her just come up with things like that.

Anyway, if anyone is interested, I would be glad to share the background (with your own little one’s pic instead of Braska’s of course) if you want to use it for this month or whatever.  The header is separate and can say anything or nothing at all.  Just puttin’ it out there in case…

And the “Down syndrome is… Beauty” image over there will be making it’s debut on a couple items, shirts etc, soon… if you’re interested in that.  I’ll put it in here too.

DSBeauty2

Thursday, October 15, 2009

31 for 21: Keeping the girls well

I apparently jumped the gun yesterday when I thought I was doing some better.  Last night the sore, swollen throat was back, and I had a very achy (head and body) night.  This morning, I felt like I was starting all over again….I’m so sick and tired of being sick and tired.

M stayed home again, still not 100%, and it was clear I wasn’t going to be able to take care of the girls, so he took a shift while I went back to bed.  I slept a couple of hours, but I’m still very uncomfortable.  Let’s hope the girls take naps at the same time, so I can sneak in more rest.

As far as Braska and Kinlee and illnesses… they seem to be really tough and well-protected naturally.  I’m sure they are more nutritionally sound than either of their parents.  With Braska on Pediasure for all her nutrition, she gets a perfect balance of all her required elements, and it seems to help keep her very healthy.  Even though “they” say that kids with DS tend to be sick more often with things like sinus infections, ear infections, pneumonia, etc, she has rarely been sick.  She’ll be 3 next month and has never had an ear infection, she had one treatment of antibiotics for a “suspected” sinus infection when we were leaving on a trip, and she has had a couple colds here or there, mostly just runny nose, but she never *acts* sick.  To be fair, she did have Rotavirus when she was 4 months old, and it was pretty bad, but it was due partly to nutrition issues at the time that caused her to be susceptible.

The pediatrician has told us repeatedly that Braska seems to be very good at avoiding illness, BUT she has also told us that when she does catch something, it will likely be a bad bout of whatever it is.  So we work hard to keep her from known exposures.  We still sanitize things like shopping carts and high chairs at restaurants, and she is not allowed to touch anything at the doctor’s office.  We avoid the “kid area” of the waiting room like it’s on fire.  For now, the doctor agrees that we have been fortunate to find a balance between keeping her TOO clean and unexposed, as some is needed to build up resistance, and being very smart and consistent about keeping barriers where they should be. 

Kinlee doesn’t seem quite as health-tough as her sister, but it’s hard to say at this point.  This week she has a bit of upper airway congestion, but nothing we can get to, just rattling heard when she breathes at night.  Overall, she’s done pretty well in her 8 months also. 

This week we’ve been constantly disinfecting, washing hands, wearing masks at times, being very vigilant about how close we are to the girls and keeping them from interacting with our germiest areas of the house, like our bedroom.

There may be a point when we can no longer keep them this consistently healthy, but we’ll do our best.  I am a bit anxious to see what will happen when Braska starts school 4 mornings a week next month.  But I’m not at all opposed to keeping her home whenever it seems appropriate.  I’m not at all a perfect-attendance-obsessed  mom.  We’ll take it as it comes and do our best.  What else can you do, really?

Do you have any tricks to keeping your kids well?  Does your plan of attack change with the seasons…being more careful about particular things during the fall/winter? If you’ve got tips, I’m open to hearing them!

Wednesday, October 14, 2009

31 for 21: Slow recovery

Man, this kicks over and over again, let me tell you. I thought I was feeling much better yesterday afternoon, then had another rough night, though not AS bad as Sunday. Today I've been up and down. Went to Bible Study this morning, because I really enjoy it, but was wiped out when I got home. This afternoon I've felt very dizzy again, as I did during the night, and just plain worn out. Hope this gets out of here soon. M's still in pretty bad shape too.

On the DS awareness note, since that's the whole idea of the 31 for 21... I'm going to try to get more Walk in the Park pics up on Braska's page today. In case you're interested...

Wishing you all a healthy day...

Monday, October 12, 2009

31 for 21: Boo on the flu

Late last night I started in with really strong shaking chills and they continued for about 4 hours through the night.  Along with the sore throat the day before, the headache, body soreness and aches, and a bit of nausea too… this was not a fun night.  About 4 am, M started in on the same path.  This is no normal 24-hour flu…at least it’s more miserable than any I’ve had. Ever.  It came on SO fast and SO hard.  Really horrible.

We went to the doctor this morning, which is saying alot…we’re not good patients and we rarely go, even when we should.  But we just couldn’t take a chance with the girls around.  Calls were made this morning and arrangements began to get the girls out of here asap.  It was handy that my youngest sister Julia was here overnight since my mom had watched the girls on Sunday for us and was returning on Monday for another reason.  Julia decided just to stay with us instead of making the trips home and back again.  She was able to watch the girls so we could go to the doctor this morning, then Rachel came when she got free from work later in the morning and took the girls to her place.  My mom got here shortly after that and did massive disinfecting and sanitizing, and we crashed and slept when we returned from the doctor visit, getting chest x-rays and lab work done.  She’s staying tonight to take care of the girls while we recuperate. We are feeling some better this evening, maybe it’s the Tamiflu, maybe it’s just taking it’s course, but I’m glad either way.

This is one of those times that I’m thankful we live here, once again.  We have back-up when we need it, and that’s important when we’re trying to make sure these girls stay well.  So thanks to everyone for jostling their schedules to help at a moment’s notice.

Wash those hands, people. Carry hand sanitizer and use it often.  I wouldn’t wish this on anyone… well, maybe one or two or three individuals, but that’s another story.  Here’s to good health returning soon…

Sunday, October 11, 2009

31 for 21: Vikings home game in St. Louis

Yeah, that’s what it seemed like.  There were more purple jerseys and hats and Viking costumes than any combination of blue and gold and white.  It was sad for the Rams. I can’t imagine how it would be to look around your home stadium and see more fans of the opponent than your own. Ouch.  I kept watching the cheerleaders and wondering how they could keep being all perky and bouncy when there wasn’t a soul in the place paying attention to them.  Or cheering at all.

BUT…

The afternoon was so fun!  I had a great time taking it all in, goofing off, watching the Viking fans…all.around.us.  I thought it was really fun!  Can I say fun again?  It was a very fun way to spend a Bears-free afternoon during football season.  M and I dreamt of the days when we will be so wonderfully financially stable that we can go see the Bears anytime, wherever they play, with great 50-yard-line tickets.  Know this, though… we kept our Bears fanship on the down low with all those Vikings around us.

Yes, it was demoralizing for the Rams.  Three trips into the red zone and all three times there were turnovers in the end zone.  I stood. I stared. I said, “Wow.”  And the several rows of Viking fans around us had lots of opportunities to share high-fives and fist bumps.  But they were part of the show for me.  Along with the hysterical Minn-e-so-ta accent.  (I do not know how to write it. But it was funny. It made me think of your old answering machine message, Randy.)

We took a ton of pics, so they’ll come along later.  For now, here’s one. It wasn’t our most photogenically pleasing day, but who cares. We had a good time!  Rach and Patrick thought we were a little giddy, I think, but they tolerated us graciously. Thanks to them for going, and thanks to Cindy for the tickets!!

(And thanks to my mom for coming up to watch the girls for us!)

mrk-rams

31 for 21: What? Go Rams?

We are headed to the Edward Jones Dome today to watch the StL Rams and the Minnesota Vikings. Our very wonderful friend Cindy gave us tickets and we picked this particular game so we could see Brett Favre in person slinging that pigskin around! (And it was nice that this is the Bears bye week anyway, so we're not missing their game...that would be unacceptable, you know.)

My sister and her husband, Rachel and Patrick, are coming along (though they're not Rams fans either...Go Patriots! For you, P!) and we're excited about some good seats and seeing some good football. At least on one side of the ball. Unfortunately, the Rams will likely lose miserably, but we'll cheer them today because Minnesota will go up over the Bears 2 games if (when) they win today.

So that's the plan. On the off chance something crazy happened, I just wanted to this be out there to mark my predictions. Bob's your uncle.

Friday, October 9, 2009

31 for 21: Stock up on Signing Time TODAY

Good news everyone!! The computer is back up and I'm so glad!

Rachel Coleman's birthday is today, and I know most of today is over, but if you hurry yourself over to the Signing Time Store, you can get some seriously good deals...35% off!

Check out Braska's blog for more info and a video from Rachel herself.

I just snagged some flashcards and a couple board books. Good stuff!

Wednesday, October 7, 2009

31 for 21: It figures

I'm out of commission...just when I need to be posting like crazy. Computer issues, power cord, actually. So be patient, and read some of the other blogs for a while.

Thanks to my dearest husband for sacrificing 4 minutes of precious computer time to allow me to share this info. And let me tell you, it doesn't come without a high price...interrupting his computer time. He only gets like, gosh, 18 hours of it a day. It's tough.

Sunday, October 4, 2009

31 for 21: DS or Down syndrome, What’s in a name?

Names are a funny thing.  I mean, in a way, names are as common as anything can be.  Everyone has one, sometimes two or three, and there are alot of them that are used quite frequently.  Some are unique, but it seems like that takes alot of work these days…people are getting more and more creative with names.

In our family, names are a big deal.  My husband’s name, though I generally refer to him as M in writing and sometimes in person, is Muncher. Yes, that’s his name. He’ll be happy to show you his driver’s license if you don’t believe him.  I have two daughters, Nebraska Larae and Kinlee Carene.  Not the most common names ever, we’re aware.  Usually they are known as Braska and KiKi.  In blog land, I’m known as RK, and many people in my face-to-face life call me that as well.  My name is Randa (pronounced ran-duh, not ron-duh) Kay, usually used with a hyphen—Randa-Kay—because I’m not a fan of Randa by itself. (Long story, not one that the blog will be carrying.)  I have a sister I’ve called by her initials for most of her life, there are others in my family who have been known by nicknames most of their lives and have started using their given names, and there are also cases of the opposite—choosing to use a nickname over a given name.

A name is a common thing, but it can also be a sticky subject with some.  Some of us get very irritated by our name being used or pronounced wrong.  How we refer to a person often is viewed as an important consideration to that person. It might not make sense to me how someone else wants to be addressed, but it’s not so much up to me as it is to them.

Most of you are familiar with how Down syndrome got it’s name.  (Short version: The guy’s name is Down. It’s not a descriptor or a direction, in this case. FYI.)

There is alot of talk, it seems like constantly, about how people with DS are referred to.  There are lots of “don’ts” about what is *not* PC and is, therefore, deemed unacceptable to most. This is not really about that. But for the record, if you want to avoid upsetting most people, using people-first language is the key. Basically, instead of saying Braska is a Down’s child or “She is Down’s” or speaking of “Down’s patients”, the acceptable way to say it is to say that she HAS Down syndrome, etc.  It’s trying to put the person before the condition.  I appreciate the idea, and I try to keep it in mind to use in group circles, but I mess up and that’s just honest.  As I’ve stated before, it’s not something that resonates with me or upsets me, so I don’t give it a big portion of my brain. But I do try to be respectful of those who feel strongly about it, and that’s fine.

Anyway, all that said—the point here is that I’m often amused by listening to groups of people within “the community” talk when we get together or post on boards or whatever.  There are some people who ALWAYS say “Down syndrome” every single time they need to refer to it.    There are some who mix a little abbreviating with “DS” into their vocabulary, alternating the uses depending on the context, I guess.  Then there are some who practically never say the whole name, only the initials.

That’s me.

I’m all about shortening everything all the time, as far as acronyms and initials and nicknames, etc.  This is why I’m RK if you ever see anything from me in writing.  I can’t be taking time type out all those other letters! Life is short!  Ok, so maybe it’s not all about that, but it’s true that people have preferences for things, and I’m sure there are reasons.  I prefer DS, and I so rarely use the full “Down syndrome” in conversation, written or spoken.

It’s not that I’m denying what it is, as someone asked me.  Not at all.  I love having a license plate frame that alerts to our extra-chromosomal princess, I can tell anyone that I work with our local DS group or that I spend alot of time talking to new moms who are dealing with diagnoses. And when I’m in a setting where people won’t know what “DS” is, I do use the full name.  I have shirts that mention DS in it’s complete verbage, and I don’t mind at all.

But when I’m in a group who all can tell me exactly what DS, PT, ST, IEP, IFSP, AAI, NG, and so many other letters are, I don’t ever use the full name.  Just seems repetitive and unnecessary to me.  And as much as I like words—and I really do—I don’t like to use them when they’re not required in that situation.

The way that adults with DS choose to be addressed, besides their given names, is varied, I have found.  There are those who will say they are a person with Down syndrome. There are some who say they “are” Down syndrome—like, “I’m Sally and I’m Down syndrome.”  It was a common practice not long ago, and I’ve met many who prefer it still. (They’ve explained it to me as similar to “I’m a girl,” or “I’m Asian.”) We know a couple who call themselves and their peers “Downsy” or “Downies.”  I know dozens of parents who would cringe at someone calling their child this, which is understandable I suppose, but those who are old enough to make the choice for themselves opt for those names, so I don’t have any problem with that.

As I’ve mentioned before, we affectionately call Braska “our little Downsie” and we’re proud of her for it.  It is a name her dad gave her completely out of adoration—he could not be any prouder of her, all 47 chromosomes.  We never ever try to keep the fact that she has DS from anyone, either in person or otherwise.  I’m proud to say that she has DS and I’m proud of every part of her, related to DS or not.  I’m not afraid of saying  “Down syndrome” but we just use the initials almost exclusively.

What do you say?  Do you find that you have a particular habit of using the initials or the full name?  Maybe you’re into T21 or Trisomy 21 instead?  Why do you choose that particular term?  Do you have any particular name quirks or issues with your given name or nicknames??

Really. I’m curious. Do share!

Saturday, October 3, 2009

31 for 21: Walk in the Park, part 1

Today was the annual Walk in the Park for the DSAGSL. We had a great team for what little effort we put into it. (We’ll do better next time! It was kind of thrown together on our part.)  Most of the family was there with us, and we really appreciate them coming out on a windy, chilly day!

We’ve got a bunch more pics, so that’ll come soon.  Our buddies from C-U also came down for it, so check out Jen’s post at ReJenerationS to see pics from their perspective.

Friday, October 2, 2009

31 for 21: Cheer!

Ok, people…football fans far and wide.  It’s time to cheer your team!  So many of us are loving this time of year with football season in full force! (Go Bears!!!)

My friend Missy has come up with a GREAT idea, and you’ll hear more about that soon.  But in the meantime, I need to see pics of your cuties in their NFL wear. Obviously, Bears-wear is the best, but we’ll accept anything. Ha!  We’re going to put this together and see if we can get some sports-related awareness going!

Email pics of your little ones with DS (with their siblings if you like!) in their football cheering stuff to braskasmom at gmail dot com.  And stay tuned to see what fun stuff comes.  And PASS THE WORD!!!   Post on your blog for others to follow… it’s all about DS awareness, and it doesn’t hurt to get to cheer on your favorite team in the meantime! (And if you have football-fan friends who don’t have blogs, let them know too!)

If you’re more of an NCAA fan, then send those on too. Maybe we can REALLY get some notice out there!

ETA: Here’s Violette…her mom suggested this!

We’re already getting pics! Fun! Keep ‘em coming!

Thursday, October 1, 2009

31 for 21: Year 3

I can’t even tell you how unprepared I am for October and fall and my birthday and Halloween (which means great holidays follow) and cooler temperatures, etc.  But one great thing about this month is Tricia’s brainchild, 31 for 21. (Let me just admit, I always call it 31 for T21 even though that’s not it’s name.  If I goof, I’m sorry…just letting you know now.)

Get It Down; 31 for 21

(Here’s a list of other bloggers participating, if you need some good reading material!)

If you’ve been around for this before, you know the drill… it’s in honor of October being Down syndrome awareness month.  We bloggers far and wide opt to commit (with fingers crossed) to blog each day in October (31 days) for DS (Trisomy 21), though not all posts have to be all about DS, of course.  It’s awareness, people…getting the word out there that this is not some kind of horrible, sad, cheerless life we lead when DS enters the picture. 

Not sure yet which direction I’ll go with this line of posts this month, but I’ve got some thoughts.  I’m praying that I can find the time to get some things down that I’ve wanted to hash out for a while.  We’ll see.

Anything that you’ve always wondered but didn’t get up the nerve to ask??  Something you’d like to know (about DS, Braska, g-tubes, toddler fashion, great books on CD, transitioning to minivan life) but don’t think it’s “nice” to ask those things?  I’m your girl… let’s have it.